eGFR of 9

[Escabeche]

My husband is now down to 9 eGFR. In the UK they start dialysis as late as possible. I’m not sure why. I assumed at first that it was about money, as it sometimes in with our medical service, which is free to everyone. Then I thought it was because his test results were still good, so it’s wise to delay putting this burden on his everyday life. Now I’m just a bit scared when I see him getting a bit weaker and more tired. His levels of potassium, sodium and phosphates are fine and so is his blood pressure. So what’s going on?

[FelineFandom146]

Hello there from across the pond from the US! I'm not a physician but I am a CKD patient of over 27 years and in stage 5 with eGFR of 10 for over a year now. I'm delaying beginning dialysis and/or transplant myself and my Nephrologist is fine with that, for now. Why? I am handling it and have no clinical signs except for the some labs to justify me beginning dialysis. As with your husband, my BP, Potassium, Sodium et al are fine. I concur with my doctor. I've done a great deal of research and yes, dialysis helps you live but it takes its toll on its body. You don't get better. Of course, everyone is different but info shows dialysis isn't a cure or a fix, it extends your life. Some people handle it better than others. Some wish they started dialysis earlier; some wish they never started it. Fact: they used to start dialysis earlier here in the US but then realized that it didn't help the body, it worsened it. eGFR didn't go up, it went down while on dialysis. How is your husband doing otherwise. Have they checked him for anemia, which also can make him weak and tired along with the CKD, as well as his Thyroid. I have my docs keep an eye on all of that, despite them not wanting to. Physicians are so quick to attribute all of a person's symptoms to CKD they forget to check for other things. ie. middle aged woman experiences sudden weight gain, excessive fatigue, bloating etc. It might be menopause. It might be something else. Over here physicians are debating whether to hold off on dialysis or begin with eGFR of less than 20. Here's a book you may want to buy or check out of a library. Amazon has it too. It is written by a Nephrologist. I have an extensive library of medical, health and books on CKD. I'm also a retired University Professor and Professional Researcher and still keep learning. This book opened my eyes to some new things and confirmed things I already knew or suspected. Learn the Facts About Kidney Disease by Steven Rosansky, MD. Best regards to you and your husband. I hope this helps you out some. Research all you can. Sit down with your husband's physician and ask questions. There are so many legitimate, helpful sites on line to help and many good books, too. Have you checked out the National Kidney Federation in the UK? kidney.org.uk/ In the US we have the National Kidney Foundation kidney.org/ Both offer lots of info that may help you! Stay strong. My spouse is my caretaker too so I understand what you're going through.

[Escabeche in reply to FelineFandom146]

This is a generous reply, thank you Feline. Everything you say fits in with my own views and circumstances. Except sitting down with the nephrologist, who is generally unavailable. I will now get the book you recommend. I’m much relieved by your confirmation that the choice to delay makes sense (for now). It’s about quality of life, but as you know, the medical model is just not catching up with that.

[FelineFandom146 in reply to Escabeche]

Can you email/phone the nephrologist? If not, I truly understand. My own Nephro is impossible to reach and he isn't even a great doctor. Can you speak with a good PCP or a Kidney nurse/PA/NP? Wishing you well. Each one of us here is experiencing something. We're not alone. Research is key to be yours and your spouse's advocate. Remember the patient doctor relationship is a team. Though some physicians think they know everything, they truly don't. I've had five physicians over the many years actually admitted to me that when it comes to practicing medicine they know just 1%. One %. Not very comforting, is it? The rest is guessing and process of elimination. Best of luck! No one knows your body better than yourself.

[Escabeche in reply to FelineFandom146]

Spot on!

[Escabeche in reply to FelineFandom146]

I called! The nurse will ring me back tomorrow 🙏

[Bassetmommer]

Each person is different. I wish I have put it off but I was a GFR of 7. NO symptoms at all. No edema, good labs, but not great. I got told it would improve my health. NOPE. That was not true. Since I started, I have had nothing but more issues. I was a little anemic, now I have to have infusions and take EPO. It has not improved any of my labs greatly. In some cases, they got worse and now have to take meds to counter the issues like a blocker. But here in the states, its big business. Every time I have a complaint, the answer is more dialysis. I do home hemo and do EVERY THING myself with my husband. At yet, Fresenius charges $8896.00 to Medicare each time. Why would they take me off?

The things to look for are uremia. If that starts to climb, he is getting toxic. He may not feel it. Just keep on top of the labs and how he is feeling. But make some decisions now, like what type of dialysis he will eventually need. And if he needs a fistula, get that done asap. Even if you do not use it for a while, it needs time to get strong. I had nothing but issues when I started because my fistula was not matured. Get some training now and see what is involved. But do not rush it because once you start, your there for life unless you transplant.

[FelineFandom146 in reply to Bassetmommer]

Great example of why many Nephro docs are now delaying dialysis here in the states, though many like my own initially wanted to, are pushing it as soon as you reach a certain eGFR number. It's BIG business to get someone on dialysis. Ironic that the need is greatest for dialysis and yet, centers are closing down. I've already made my dialysis decisions and learned what is involved, as well as for transplants, but I'm not getting my fistula, yet. Why? I don't need another issue to deal with. I'm planning for the worst and praying/hoping for the best.

[Bassetmommer in reply to FelineFandom146]

I encourage you to rethink the fistula. Getting one is no big deal/ The surgery was fast and I was in and out. There was little pain, if any. I had a great surgeon. However, I started dialysis three months later. AND OMG, big mistake. The fistula was small, narrow and not easy to use. The nurse who cannulated me infiltrated me severely the third treatment. It was horrible. My arm turned black and blue from shoulder to elbow and was swollen. It was the most painful thing so far. After that, I had three more infiltrations, and they were bad. Once I finally got to doing it myself, it went better. However, it took a year for it to be easy access. I actually got myself last week, but it was because the needle moved once it was in. Just a little bruise.

Being prepared is smart. It's not giving in. If you cannot crash into dialysis, it's so much better. There is a catheter they can insert but that has mega problems and if you can avoid it, do so.

[FelineFandom146 in reply to Bassetmommer]

Thanks so much for your input. My Nephrologist said the same thing but life is uncertain and I'm working at keeping healthy. No one can guarantee what happens next. Not even my doctors. I could die from any cause right now, in a minute. Tomorrow. I appreciate your insight. I really do. I'll go wherever the dice roll and play from there. I'm not religious but I do believe in God, the power of prayer and that when our number is up, there is nothing that we can do about it. But, I also believe that God helps those who help themselves and that is what I'm doing. It's the only thing we can do. I know the symptoms of uremia, which my spouse and I check on all the time.

[Escabeche in reply to FelineFandom146]

It’s the only thing we can do. Of course we’ve planned, but thankfully the future is uncertain. Concentrate on today. Oh dear, it’s so easy to give advice I can’t follow

[Sapphire187 in reply to FelineFandom146]

What did you learn about kidney transplant? Have you decided which treatment you want to do and why? Just curious because I am trying to decide which would be better for me,

[Escabeche in reply to Sapphire187]

We haven’t decided yet but the first choice would be a transplant. In terms of dialysis my husband prefers Peritoneal Dialysis at home

[FelineFandom146 in reply to Sapphire187]

I have chosen transplant over dialysis when the time comes, if I can get one. The list is long and I've been unable to find a living donor, as yet. That would be the best option out there. Less chance of rejection, drugs, and no dialysis, if my body takes to the transplant. Not all kidney transplant take. Dialysis is an option if there is no other choice as it continually breaks down the body. One does not get better on dialysis. One just gets extended life. Everyone is different, though. Some people love dialysis and choose it over transplant and vice versa. There is no clear cut easy answer or a quick fix. Both are band-Aids to help you live. If one can get a living donor for a transplant, that is the better option, and the one I choose. Dialysis patients die everyday waiting for a transplant. We need more organ donors. I am a organ donor. I've always been an organ donor. I can't donate my kidney but everything else is up for grabs. More people need to be donors.

[Sapphire187 in reply to FelineFandom146]

Thanks for sharing. I have an opportunity for a preemptive living donor transplant, but none of my HLA antigens match the donor. The transplant center is telling me they think it will work for me. I am worried because it is a 0/6 match. We have compatible blood types and the crossmatch is negative, but that's it. I have to make up my mind if I want to do it within the next couple days. I have scoured the internet for all the information I can find, but haven't found anything that makes me comfortable about going with a 0/6 match. Based on what I've read, a 0/6 match will require very aggressive immunosuppressant therapy and I don't like that at all because higher doses likely means more or worse side effects. A 0/6 match also means a greater chance of graft rejection. I hate both options, but I have to choose one eventually. Hope you are able to get a transplant without a long wait.

[Escabeche in reply to Sapphire187]

I don’t have any answers but I’m right with you in spirit. Can you get a second opinion very quickly? If so, I hope you have immediate access to all the relevant information

[Escabeche in reply to Bassetmommer]

Money for basic health. It’s just so stupid in wealthy countries.

[Escabeche in reply to Bassetmommer]

good one thanks. We’ve chosen home Peritoneal Dialysis and he plans to do it overnight, every night

[Pontios in reply to Bassetmommer]

Hi Bassetmommer, am very sorry to hear that dialysis has been so bad. Hoping you get a transplant. You have been a source of such good advice to all.

The $8,896 cost you mention is that per year, per month, per day or per dialysis session?

[Bassetmommer in reply to Pontios]

Per session, then you have to add thousands more for the labs I draw, and go to Fresenius, and then more for clinic visit and the doctor, all billed by Fresenius. Plus you have to buy all your supplies through them. Fortunately all is paid for by Medicare, but it is a crazy amount. We figured out it was over 2 million a year they get for me. No exaggeration. Me alone!

[Escabeche in reply to Bassetmommer]

I’m speechless

[Darlenia in reply to Pontios]

That's the amount dialysis centers can charge, hoping to receive it - it's similar to the "suggested retail price" one sees here and there. But Medicare negotiates it down to far less than that per session so that's what the dialysis center receives. My husband has a transplant now but I think, around 3+ years ago, Medicare was paying less than $2,000 per HD session in Northern Virginia, outside WDC. It can vary somewhat depending on location, whether it's an emergency session, etc. However, if someone walks in without Medicare or insurance of any sort, the cost soars for that individual - individuals have little ability to negotiate. Overall, HD is more expensive than PD.

[CatsAreTops]

Under my nephrologist’s care, I started dialysis in Australia once eGFR dropped under 10. If bloods are reading well I’d hold off on dialysis as long as possible.

[Escabeche in reply to CatsAreTops]

After much soul searching I fully agree. I don’t know why I didn’t realise it before. I’ve always known that dialysis won’t reverse anything and that it’s so hard to live with, but I suppose I was too frightened for my husband to think straight. Thank you.

[dataguru]

Hello Everyone, I'm 62 year young male, with one transplant in which the kidney rejected and have returned back to dialysis twice a week, however I'm still taking anti-rejection drugs due to some activity with failing kidney.

Please share thoughts...

[Sapphire187 in reply to dataguru]

I don't know anything about your particular situation, but I'm very sorry to hear your kidney rejected. I imagine it must be difficult to go back to dialysis. I am not there yet. Prayers for you that things work out for you.🙏

[Escabeche in reply to dataguru]

That must have been disappointing to say the least. Do you know if it can be attempted again? I’ll be interested to know if others here have had a similar experience